June 15th, 2014

Poll: Should ID Doctors Still Do HIV Primary Care?

My friend and colleague Ken Freedberg is giving a talk soon at our regional IDSA meeting called, “Who Should Be Providing HIV Care?”

He’s a very smart guy (except during the football playoffs, when he is possessed by evil forces), so maybe he’ll answer this question that has strangely bedeviled our field for decades. But I’m sure his talk will be interesting even if he can’t solve the problem.

To recap a little history, jammed into this tiny paragraph: In the early days of the epidemic, some (but importantly not all) ID specialists didn’t want much to do with this highly charged, rapidly fatal disease of young and often stigmatized people. In response, other specialists and non-specialists got involved, forming the mixed blob of “HIV specialists” that we recognize today — a group of ID doctors, sure, but also internists, family practitioners, other medical subspecialists, nurse practitioners, PAs, etc.

Periodically, people with opinions on these sorts of things have weighed in on who provides the best care to those with HIV, or a slightly different take on the question, who should actually be doing it — especially the primary care part. A consensus has emerged that someone with experience and interest in HIV should be that person, regardless of training.

But even though the question has remained the same, the context has completely changed. Thinking back to when I saw my first outpatient with HIV in 1987, I can define roughly 4 eras:

  1. 1987-1995:  Prevention, diagnosis, and management of opportunistic infections. Palliative and hospice care. Lots of putting out fires, putting fingers in leaky dikes, and rearranging desk chairs on the Titanic. (How’s that for battling metaphors). Plenty of  tragedy, with accompanying intense family meetings.
  2. 1996-2000:   Combination therapy arrives, with highly complex and toxic regimens using early generation PIs and NRTIs:  ZDV, ddC, soft-gel saquinavir anyone? (That’s 27 pills/day, for those counting at home.) How much water should you drink each day to prevent indinavir-related kidney stones? Any downside to daily Imodium or Lomotil use? Can anyone really chew a full dose of ddI?
  3. 2001-2005:  A growing awareness of the long term toxicity of certain HIV therapies. The “when to start” debate. Treatment interruptions of various flavors. Lots of resistance testing for treatment-experienced patients, many of whom were perfectly adherent but had no active drugs. Crazy salvage regimens that included “double-boosted PIs” and “mega-HAART” (ugh).
  4. 2006-today:  More and more (and MORE!) patients every year on suppressive therapy. Clinical visits focus on prevention and screening, mostly targeting “non-communicable” comorbidities — heart disease, cancer, bone health, etc. If HIV therapy is discussed, it involves consideration of switching to simpler regimens, or whether HIV can be cured. (Can sometimes do the former; not the latter.)

During eras #’s 1-3, and the first few years of era #4, most ID doctors with HIV interest were ideally suited to doing HIV primary care. We loved this stuff, and each step forward was more and more rewarding — thrilling, even. Plus there were papers — actual data — showing that the more experience you had, the better the outcome for your patient. This paper was the most widely cited, back in Era #1. The lead author was (and is) a primary care internist, but the message resonated with ID specialists, who in many healthcare systems did the most HIV care.

Generalists, meanwhile, became progressively estranged from HIV as the eras progressed. There was a seemingly endless parade of new agents, the codes and complexities of resistance testing were befuddling, and the mile-long list of drug-drug interactions loomed ominously. I remember one (excellent) internist telling me that he got about as much out of reading an HIV resistance report as he did interpreting an EEG.

But how about today? An ambulatory practice once dominated by crisis management is now a comparably calm state of affairs, at least medically — the vast majority of people receiving care are virologically suppressed, and have been for some time. If 80% or so of patients in HIV care are stable, we can legitimately ask the provocative question — does it make sense that ID doctors still act as their primary care providers? Shouldn’t we move to the oncology model, where the specialists guide decisions about cancer treatments and complications, then the long term non-oncology follow-up of stable patients is done largely by generalists? Furthermore, aren’t generalists better at screening and prevention for non-ID issues than ID docs, who don’t focus on general medicine during their subspecialty training?

Or to take the other side: Shouldn’t ID doctors keep doing HIV primary care, since we have a nuanced view of HIV disease that didn’t come easy. The authors of these primary care guidelines, for example, are mostly ID docs. Example of “nuanced view”: We know we can largely ignore the atorvastatin-boosted PI drug drug interaction (just start with a low dose), but the fluticasone-boosted PI one can be a real nightmare. And wouldn’t our patients we’ve followed all these years wonder why we were dropping them from our primary care?

Since I’m not sure of the answer here, please take the following poll — and feel free to note your further thoughts in the Comments section.

Should ID doctors still do HIV primary care?

View Results

11 Responses to “Poll: Should ID Doctors Still Do HIV Primary Care?”

  1. Deborah Cotton says:

    I wrote about this topic WAY WAY back in the day. Might be amusing to read: Cotton D. JAMA 1988:260:519-23. The Impact of AIDS on the Medical Care System.


  2. Lynora Saxinger says:

    Interesting post, as we are in the midst of trying to sort this in our 1500 pt clinic. An issue is that we see our more chaotic patients quite frequently – it becomes unworkable to send them to a PCP for problems arising. However, many of our patients who are very stable are aging gently into more blood pressure and lipid issues and I don’t really think I am the best at primary care for aging adults. I have to look up current screening recommendations, etc. So it is evolving into “sometimes” as an answer.

  3. Liz rantz, MD says:

    Every HIV patient should have an ID doc watching care, but for routine and general health care she really needs a good nurse practitioner who can spend the time necessary, and be easily available, to meet all needs.

  4. Daniella Machado, MD says:

    As a family physician in Southern Brazil, I have been asking myself this question more often lately than anytime before. I do believe, the main challenge is to discuss and find out how to integrate different jobs in continuous care that works at its best for each patient. Traditionally, we primary care providers think of ouserlves acting as care coordinators. It can, however, be difficult to keep track of everything that might be associated with HIV therapy, for example. For now, sharing information and not going beyond my limits are my main rules.

  5. Thanks for a great post. The bottom line is we need better outcomes for PLHIV, in the United States and around the world, if we are going to achieve virologic suppression and the holy grail, reduced HIV incidence. As you note, a wide variety of providers take care of PLHIV, and it depends on the context. For example, nurse initiated ART is increasingly common in many countries in Sub-Saharan Africa, see:
    I think we need a team approach. ID doctors have a role to play (where they are available), as do the other cadres mentioned above, and, importantly, community health workers. The team taking care of PLHIV needs to get out in the community and understand the biosocial context PLHIV face, irrespective of if they live in rural Zambia or inner-city Atlanta. This Mozambique article discusses an innovative approach to community adherence support groups:
    How can we tighten the leaky cascade of care? It hasn’t been easy and won’t be easy. The other thing I see that needs much more attention is mHealth: how can technology help our patients get HIV tested, link into care, and stay on ART? Any clinicians who think outside the box on this issue have the potential to contribute.

  6. Rogerio Luz Coelho, MD says:

    Here in Curitiba – Southern Brazil we have a highly effective public health system (compared to our peers) and that move is done with involvement of PCP and NP with high motivation to do the 85% rule: primary care takes care of 85% of all the patient’s needs.

    In ID we (primary care) are the main Tuberculosis / Hansen Disease providers since Brazil has adopted the WHO supervised treatment model (patients take their medicine in front of a trained nurse / medical assistant and if they don’t come to the practice the practice is responsible for finding and rescuing the patient’s treatment – you think that’s hard? … try it in a “homeless / street living” crack epidemic high incidence of tuberculosis patients we have to convince to adhere to treatment in the public setting 🙂 .

    We are now more and more going to be the primary HIV-care providers, since the drug choices in Brazil are limited and goverment-funded, we have also limited (or at least well known) problems with our regimens.

    Training has to be done and is not that easy, but it is possible.

    Maybe this transition can be made easier with well developed, setpwise, scientifically sound, concise guidelines. But as the main text argues, it will have to be done with more of us family / primary care HIV “specialists” than it is done right now.

    But I advocate that the future of HIV is Primary Care … with maybe ID-HIV specialist in the backseat, as is the case with Hypertension and Diabetes (the dificult cases go to the specialist).

    Cheers 🙂

  7. I believe we should be asking and answering this question from the patient’s perspective, not from our ownership perspectives. I am a primary care physician, and all my patients, including my HIV positive patients, voice their desire and appreciation for comprehensive whole-person primary care. When they develop chest pain, shoulder pain, or back pain, they need the advice of their doctor – not just a telephone referral to yet a different doctor. Their primary needs to do the cardiac risk evaluation, the shoulder exam, or the back function assessment. The primary needs to be comfortable managing chest pain in the office without referring all nonanginal pain syndromes, performing shoulder injections when necessary, and supervising physical therapy orders for back pain. The primary needs to evaluate nonspecific symptoms such as fatigue to fully triage and actively own management of all outcomes – leukemia to hypothyroidism to depression – by providing initial diagnosis and first line therapeutic interventions for whatever walks in the door. As patients age, they need to maintain their established trust relationship with their primary doctor, who can recognize when recommendations should deviate from standard guidelines. If an ID physician is ready and able to truly perform these and many more functions as a true primary physician, then by all means they may do so. If the ID physician instead misperceives primary healthcare as simply screening and immunization recommendations (which in fact are in the scope of nursing practice, not physician roles), referring their HIV patients to other subspecialists for true primary health care, then the patient is poorly served and the health system bears the effects of care inefficiency. Primary care is a big, complex, highly specialized job. Any ID physician who is up for the task is welcome to roll up their sleeves and assist with our primary physician shortage, but those who wish to keep true primary physicians on hand only for occasional assistance with non-reimbursed paperwork will find primary physicians less welcoming of that expectation.

  8. Josep M Llibre says:

    In Spain we used to have a highly efficient public heathcare system.
    My opinion is that everyone has to do their job. ID or even HIV-specialized physicians (not skilled in tropical or bacterial diseases) and hospital-affiliated HIV Units take care o the HIV disease and the most important associated co-morbidities: papiloma-screening programs, hep C coinfection follow-up and treatment, STI screening, HIV prevention programs.
    Despite most patients being undetectable, we continuosly review their ART searching for long-term hidden toxicities that would not be seen if not appropriately searched for (i.e. bone architecture, kidney tubulus, neuropsichyatric diseases and symptoms). Switching ART is currently a keey question asked i every visit, tt can only be solved by a skilled physician. Cost-economy decisions and issues arising are seen also commonly.
    Stable patients are only seen twice a year and CD4 counts could be done only once a year and this s affordable and efficient.
    Primary care physicians do their job in effective programs about hypertension, cancer screening, etc. HIV-infected subjects have also theis right to be included in these programs directed at the whole community. However, they do not want to take care of this complicated disease. They’re overloaded with work.
    As Paul says (he uses to be always right) the appropriate candidate physician for taking care of HIV people is someone with experience and interest in HIV and, of importance, who is committed to continuos science update both in the literature and medical conferences and workshops. That effort seems only justified if you take care of a big cohort. Otherwise it’s not worth.

  9. Pamela says:

    I think this is not an either or issue. It will depend on the local context. In many countries supported by PEPFAR, GPs or Primary providers and other health workers may manage people living with HIV, and it is done well. Systems are also put in place to support the patient in terms of adherence and psychosocial support. I think in the US, this would be ideal for Primary Care docs to at least be able to co-manage patients with HIV with the support of an HIV provider or ID doc. Having worked in PEPFAR for about 10 years with some time providing clinical care, I would feel comfortable managing non complex cases but would welcome access to an HIV specialist for cases that are more complicated or nuanced.

  10. Cedric says:

    I’ve worked in two different contexts: In a New York inner city HIV clinic as the HIV patient’s primary care and HIV medicine specialist, and also in China in an HIV treatment center as an HIV clinical consultant. While in my New York practice seeing patients, I felt very comfortable with the HIV medicine part, and then I would go to the other medical problems (hypertension, diabetes, screening, vaccinations, etc) and I would easily feel a bit overwhelmed. Just like keeping up with changes in HIV medicine, understanding and practicing general medicine very well is a full-time job. I think in this instance I think I would welcome an “oncology” type model. Now here in China, at least where I am working, there isn’t a strong concept of primary care medicine, medicine is still largely specialized. So the HIV patients coming to be seen are only seen for HIV related issues. The doctors here are not ID trained, but a dermatologist, an internist, and a generalist and they do quite fine. I think mainly it is because HIV treatment here is highly algorithmic, and there are very limited HIV medications to use.

  11. Christian Ramers says:

    Thank you for bringing this up. I don’t think there’s a black and white answer here, and I really like the consensus statement of ‘Someone with experience and interest’ should be providing the care, regardless of training. Patients need medical homes, and in our country this has often been in Ryan White-supported clinics, where all sorts of ID docs, primary care internists, FP’s, NP’s, and PA’s have worked. I’m a bit concerned about how the ACA might shuffle our vulnerable patients around and perhaps unintentionally result in some interruptions in care.
    I currently provide HIV care in three slightly different ways:
    1. Directly seeing patients myself (e.g. my own panel)
    2. Supporting other PCPs within my organization who have an interest in HIV in a consultative role
    3. Telehealth mentoring relationships with clinics that don’t have ready access to HIV specialists but have need and motivation to take on HIV.
    This third approach is a highly rewarding and efficient model to increase the HIV workforce and allow experience and expertise to permeate wherever there is a good internet connection and a group of clinicians willing to learn together. The billing model for these service is still in development, but it is an incredible ‘disruptive innovation’ that has worked for HCV treatment and might solve the workforce/ACA transition
    See: http://opinionator.blogs.nytimes.com/2014/06/11/the-doctor-will-stream-to-you-now/

HIV Information: Author Paul Sax, M.D.

Paul E. Sax, MD

Contributing Editor

NEJM Journal Watch
Infectious Diseases

Biography | Disclosures | Summaries

Learn more about HIV and ID Observations.